Postings to keep friends and family informed about my dealing with CLL and Small Lymphocytic Lymphoma (SLL). Sometimes informational, sometimes random thoughts, and perhaps, sometimes just ranting.
PLEASE DO NOT take anything I write as medical advice for yourself. I am NOT a doctor and do not play one on TV!

Thursday, January 01, 2009

This and That

And so we begin another year with new hopes and new adventures in a future we can't see. Sometimes that is a very good thing. Will 2009 bring more rounds of chemo for me? If it does, I won't be too surprised. Of course I will be thrilled if I get through another year without more chemotherapy, which certainly could happen. I am already much further ahead than my doctors or I thought and we thank God for that. Cheryl and I went to Houston for another appointment at MD Anderson this past Monday. It had only been four months since my last time there and I was a little shocked with the blood work results. My IgG level was WAY up at 973 and it has been a month since my last infusion. A couple of months ago it was down to 220 four weeks after an infusion, so this is terrific. Dr. Wierda said to skip this month's infusion scheduled for this coming Monday...yea. Now I have to convince my local doctor to go along with that, which I think he will. Once we started these infusions to stop all the infections, the idea was to get the IgG level to over 700 and infuse whenever it drops below 700. I know doctor Hamblin had said that studies showed that the infusions were helpful only when the level was below 300 and the patient had been getting infections, but except for the E. Coli infection in my lungs I had this year, the constant infections have halted, so it is working for me.

Another bright spot, my platelets are continuing to be up very near the normal range. This time at 128...double yea. Normal is 140 to 440. On the not so positive side, my absolute lymphocyte count almost doubled in four months. If that count doubles in six months or less, that is an indication for treatment. However, no decision is made on just one test and the number is still relatively low for someone with CLL so this jump isn't as critical as it might be if the number was higher. However, if it doubles again next time, that very well could be a trigger. That count is 16.24, up from 8.23 four months ago and 6.08 eight months ago. Normal for their lab is 1.00 to 4.80. My white count is up to 19.1 from 12.1 four months ago and 7.6 eight months ago. 4.0 to 11.0 is normal for that lab. Overall 16 things were out of normal range, either too high or too low, of the 45 things they tested for. In the overall scheme of things, not bad. Because I get my blood work monthly here at home, the climb didn't seem quite so dramatic. Except for lack of energy and my bad back, I have been feeling good. I was feeling worse a year ago when my counts were better!

When Dr. Wierda said to come back in four months, I gave him my sad puppy-dog-eyes-look and stuck out my lower lip. Then he said, "OK, come back in six months." First he had confirmed that I see my local doctor for blood work once a month so he knows I am closely monitored.

While still on the topic of health, please keep David E. in your prayers. He is my Internet friend who has the advanced prostate cancer. He has his final rounds of chemo coming up and it is barely keeping the cancer at bay. After he has his final round on the 15th, he, his wife, and his doctor are going to have to decide what the next steps will be. He has a strong faith but of course this is very worrisome. This month he also enters his fifth year since his diagnosis. He was diagnosed just shortly before I was.

We had our usual exciting New Year's Eve last night. Cheryl went to bed early and I watched the ball drop in Time's Square on TV -- twice. They replayed it for our time zone. I had every intention of going to a party/open house a former co-worker was having, but Cheryl had gone in to work at 4:30 a.m. and was too tired to go. By the time evening comes around, I have zero energy, too.

I spent much of the evening comforting my shaking dog. Fireworks send him into panic mode and we have lots of illegal fireworks going off in our neighborhood starting at dark. At 1 a.m., after it was pretty much over, I tried to take him for a walk before we went to bed. I had to force him out the door. We barely got down our walk and one went off in the distance and he tried to run back. I made him go down the block with me, but his tail was always between his legs and he wouldn't get off the sidewalk. Then we came home and I forced him into the back yard. Still no luck. When we got up this morning I took him out on the leash. At first he still refused to go out, but finally realized there were no more big bad booms. I sure am glad I only got him for companionship and not for protection.

It Pays to Advertise

I hope you had a wonderful Christmas. Christmas is my favorite time of year as we celebrate the most wonderful gift ever given to mankind -- the birth of Jesus Christ. We celebrated twice this year. First with Cindy, Jonathan and Gavin. Corbin, her husband who is an oil driller, was called back into the oil fields two weeks before Christmas. He is in New Mexico and Cindy and the boys flew out to be with him for Christmas. So we exchanged gifts the Sunday before she left. It was such fun watching Gavin open presents. He had fun ripping paper and playing with boxes. He did very well for being only six months old. Here are a couple of the pictures they gave us for Christmas. We actually got a bunch of poses, but I will only post these. I don't want to brag too much on my wonderful grand kids:Because the desktop computer is about useless and that is the one Cheryl uses mostly, they decided to give Cheryl a laptop, fix that desktop for the grand kids to use, and also got a docking station with a switch so she can still use it in the computer room with her mouse, keyboard, and monitor. She will password protect it so the grand kids can't mess it up. They included a 24 inch monitor, but it doesn't fit on her computer roll-top desk. We haven't quite figured out what we will do with that, yet. Now true, I didn't get my dream desktop, but the actual problem was solved. Hmm, maybe I will buy myself a desktop with blueray player and use the 24 inch monitor. I will have to save my pennies first.

They got me a fantastic, new digital camera. It is a Canon, but even better than the one I had been hinting for, well blatantly writing about. It is a good one! I started taking pictures before reading directions and at first I was disappointed with the results. Then I learned I was doing it all wrong. I am just now figuring it out and it takes TERRIFIC pictures. It has tons of different settings. I use auto setting if I want to make sure I get the picture. I know I will get better with it. Here are a couple of my first attempts that I didn't delete (some were much, much worse) and then one taken later:On Christmas eve we attended the candlelight service at church as we always do. The service ends with the flame from the Christ Candle being passed throughout the congregation to small candles each of us are holding. It is so neat to watch the flame being passed until the entire sanctuary is aglow from over 900 candles burning. Very impressive and moving. A we pass the love of Christ from one to another, the results are also very impressive.

Then we came home and had our first annual, non-traditional, pizza dinner with Cheri, Marc, Holly and Jimmy. Usually we have a regular Christmas dinner of turkey or ham on Christmas eve. However, this year Cheryl was turkeyed out from Thanksgiving and then our SS department party at our house where we also fixed a large turkey. She isn't that fond of ham, so we decided to do this. Of course the kids loved it. After dinner I read the Christmas story as I traditionally do each year and the kids opened one gift.

Cheri, Marc, and kids decided to spend the night so they went back and got their dog and brought her here.

In the morning we got up fairly early and started opening gifts. Guess what I got from Cheri and Marc? A Garmin Nuvi GPS - and it speaks street names, just like I wrote about. Now where did they get that idea? HA! We used it to go to MD Anderson and it actually took us on a much faster route in Houston than MapQuest always had us go. And coming back out it was slightly different but still much faster. It was great! We even found a short cut leaving the Austin area that cut out two miles. We still haven't figured out a name for the female voice we are using, but we will. The one we used in New York we named Thelma, so perhaps Louise is appropriate for this one. If I want, I can even have it speak Russian and have all the text in Cyrillic! (I was a Russian linguist in the Air Force.) Of course I would have to call the Russian lady's voice Svetlana, Tatyana or maybe Natasha. No matter what name I use, I can now find my way home from church and don't have to wear the sign around my neck Cindy got me last Christmas. That sign said, "If found, please return me to..." and my address and phone number.

Everyone got wonderful gifts. The kids each got a laptop, too! Black Friday specials from their Mom and Dad. After gift opening we fixed breakfast of bacon, eggs, toast, and cinnamon buns. It was great. Marc then drove to another town and picked up his other daughter and brought her back here. In the afternoon, we had our first annual non-traditional grilled steak dinner. Normally we have left overs from the night before, but that wasn't going to work this year. So, I grilled steak, we had fries and a traditional fruit salad -- can't throw out all the traditions.

It was a wonderful day!

Oh, I also got my eyes examined and picked up my new glasses this week. So, I got most everything I had posted about under the post "I'm a Gadget Guy." It really does pay to advertise. Now, if I can just convince Cheryl I really do need a flat screen High Definition TV! HA!

41 Years!On December 23rd we celebrated our 41st Wedding Anniversary. Where does the time go? We actually went out to dinner that evening which doesn't often happen. Usually we are so busy getting ready for Christmas, we are too tired. This year, we were ready the earliest ever. Cheryl said this was the least stressful Christmas she can remember in years and years. I think this picture says it all:

Where Is My Energy?

I think the most frustrating thing about CLL is the fatigue and lack of energy. I have big plans for the day of all the things I am going to accomplish and then little actually happens. Now true, sometimes it is just lack of motivation. But many times I just get started and sputter out. Case in point, it took several weeks to decorate the outside for Christmas and that was even with Jimmy and Jonathan's help. They got up on the ladder for me for the roof lights except for the two tall peaks. That height scared both of them too much so I did that part. I could barely make it up the ladder and that really depressed me. I used to do it all with no problem. Last year I did the front and Jonathan did the side when I tired out. This year I could barely make it up the ladder the second time and I really doubt I could have made it a third time. Grrr!

Later that week, as I was putting rope lights down to outline the sections of the yard, my back was hurting too much with the constant bending putting in the stakes, so I got down and crawled around doing it. Then when it came time to get up, I didn't have the strength and I was outside by myself. I had to crawl over to a tree to help pull myself up. Of course every time a car came down the street I stopped crawling and pretended I was doing something right there.I was trying to get things done for the annual Sunday School Christmas party we host at our home. I had a lot done but still didn't have the lights around the garage and the three evergreen trees. But I had a week left to do it. Everyday I planned on going out and didn't. Finally on the Saturday of the party I was out there and finished up about 3:30. I didn't even have all the lights out I normally do. Oh well, it still looked nice. Next year I might just put electric candles in the windows. If I can find the energy. And the extension cords.

4 comments:

You know, I tried the advertisements on my blog, and I still didn't get my camera or laptop. Guess I should just be glad I didn't get coal. :) Glad you had a great Christmas.You know, I see you at church, but it's always in passing or when one of us is talking to someone else. One day, we will meet face to face.

Thanks for the beautiful pictures of your family! I enjoyed looking at them. We had a wonderful day here at home and then off to my mom's to eat chili and soup and play games all day. Saturday was spent celebrating with John's side of the family. It was so good to be together and enjoy each other's company. So thankful that some of your numbers are looking up. Praying that 2009 is a great year for you and your family. Sheri

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About Me

I retired Sept 1, 2007, after 40 years of Federal, County, and State government work. I joined the USAF in Feb. 1967, where I was a Russian Linguist and then a trainer at Goodfellow Air Force Base. I rose to the rank of CMSgt (E-9). After retiring from the Air Force in Jan. 1991, I worked at a court residential treatment center in San Angelo, TX, and then became a probation officer. Moved to Round Rock, a suburb of Austin, in 1996, where I trained probation officers for the TX Department of Criminal Justice. I escaped, er, transfered to the state health department in 2002 and began training Risk Reduction Specialists who work with people who are at risk for HIV/AIDS, Hepatitis and other sexually transmitted diseases.
I married Cheryl Redfield 12/23/67. We have two daughters, Cheri and Cindy, and five grandkids -- two from Cheri -- Jimmy and Holly, and three from Cindy --Jonathan, Gavin, and Jackson. One great grandson from Jonathan -- River. We also adopted one of my wife's brothers, Ronnie, when he was 14 and he now has a daughter and two grandkids.
I am a Christian and a member of Crosspoint Baptist church, Whitesboro, NY.